In early 2011, we were in the midst of a medical and bureaucratic nightmare. Our precious Angie was having siezures as long as three hours in length despite numerouse seizure medications, and the doctors had told us in no uncertain terms that her next seizure could be the last. Her prognosis was very poor. At the same time, she was trapped in foster care by a system that did not believe critically ill children were adoptable, and also believed that life-saving treatments were not appropriate for the child that we loved as our own. We were in a really bad place.
Many of you know the story........we were finally able to wade through the system and surgery was scheduled at OHSU in Portland, until the surgeon became ill and cancelled the procedure just one week before it was to happen. We scrambled for another option, despite the constraints of state medical insurance that dictated her care. We contacted Dr. Mathern, a renowned neurosurgeon at UCLA, and he agreed to see her for an evaluation. This was when I met Monika Jones, who founded the Brain Recovery Peroject with her husband, Brad. I did not know Monika, and she did not know me, but she invited me in stay in her home while we were in Los Angelas. Her son, Henry, had experienced hemispherectomy surgery and she became my lifeline. I have seen her reach countless other parents in similar ways when they were at the lowest point in the journey.We were here:
We did not end up going to UCLA because of Angie's insurance constraints, and you know the rest of the story. But, I want you to know that Monika and the Brain Recovery Project has been by our side throughout the process of helping Angie (our sweet Angela now) to recover from major brain surgery, and to navigate Life After a Miracle. The BRP is not one of thise nonprofits that solicits donations every year for an elusive mission that pulls at heartstrings but nobody really understands. The BRP is personal.
Because of the Brain Recovery Project, we have learned how to adovcate for educational services that truly fit Angela's learning style, based on her disability. At age 9, she began to read because of the information we gained about learning to read after hemispherectomy-and wonderful school support. The BRP has funded important research that informs families about how children, and adults, are impacted by major brain surgery. The organization supports innovative solutions to help children regain hand function and other skills, and they provide advocacy and support services for families through the IEP process. The BRP plans "reunions" for families so we can meet an encourage one another, and so the children can meet and form friendships with others like them. About 150 children in the U.S. undergo hemispherectomy surgery for treatment of seizures every year, and many others have other surgical measures to treat seizures. We can reach out to the BRP for help at any time as new challenges come up. And we do.
The Brain Recovery Project touches people. The results of their efforts are evident in our family's lives and in others like us, every day. If you were able to give-THANK YOU. You have touched people directly with your gift. You can see the ongoing progress of the campaign, or make a gift, by going to the link below. Our family is so grateful. I will leave you with one of my favorite pictures, taken of Angie gripping Toby's hand before she had come out of the anesthesia after surgery:
https://thebrainrecoveryproject2017.causevox.com/kara-harris
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